Faced with the challenges that came with an undiagnosed TBI, she struggled to find support, services and resources to help her move forward and manage her injury.

Robin found herself on a frustrating and exhausting physical, emotional and mental journey forward.

Robin’s road to becoming a superhero was formed in 2013, when she discovered one of the Brain Energy Support Team (BEST) local brain injury support groups in Washington State. Through the group, she learned how to acknowledge and accept her brain injury.

For Robin, positivity and healing came in the form of other fellow superheroes in the brain injury community who shared some super-powered tools.

Together, both things helped her find new superpowers and rebuild her life.

Robin summed it up this way: “It’s pretty simple: when all the systems and services that are in place to help with brain injury failed, BEST was, and is, the only place where I found hope, recovery, friendship and family.”

Only three months after being in the support group, she became the support group co-facilitator. Robin also participated in BEST’s Identity and Moving On After Brain Injury program that provided a guided process to help create a plan for the future and gather more tools and strategies to carry out that plan.

“Moving On gave me hope,” says Robin. “In addition to the support group, I went to Our BEST Space, and that gave me a community, support, belonging and acceptance.”

Fast forward to today.

Robin has served as the Program Manager for BEST since 2015 and manages the BEST Superhero Shoppe in Our BEST Space, a fun superhero-themed store featuring superhero accessories, specialty gifts and much more.

Proceeds from the Superhero Shoppe benefit brain injury survivors and their families in Washington State.

Robin is one of BEST’s biggest supporters for Giving Tuesday. This year’s theme, Building Superheroes, resonates with her personally.

“If I can help others become a superhero to themselves, then I couldn’t be happier!”

Do you want join Robin and the rest of the superhero team and build superheroes, too?

Here’s your chance!

Join us on Giving Tuesday, the international day of giving back, Tuesday, November 27, 2018 and share your monetary gift with BEST (any amount helps). Our goal is noted below.

Want to offer a gift today? Fantastic! Click here to get started (it’s fast, easy and secure). Superpower your gift by becoming a BESTie with a membership by clicking here.

In the Puget Sound area? Join us on November 27, 2018 from 10 am to 4 pm at Our BEST Space and the Superhero Shoppe in University Place, WA, for a special celebration with light refreshments available. Donate at the Space and receive a special handcrafted, Building Superheroes, magnet courtesy of Heartfelt Tidbits of Creativity ((while supplies last).

Two years ago, on November 8, 2016, was the day I had a major stroke, and if I have anything to say about it, it will be the only one. I simply don’t have time for another one. I still have too many things to and too many goals to accomplish.

Let me take a quick inventory here of what’s happened with me since last November 6th.

Apart from my doctors tell me my overall health is good, my blood pressure is completely stabilized and not likely to cause another stroke any time soon. Of course, I still live with the effects of the traumatic brain injury (TBI), but as they say, at least I have my health.

To me, the rest is icing on the cake.

But before I get to the icing part….

I recently was able to fill in some of the blanks about what happened between the last thing I remember and when I woke up in the hospital, things I’ve always wondered about. A few days ago, I finally got around to asking my housemate in St. Paul, Minnesota, at the time, Tim Ellis, about what happened that day.

Tim tells me he discovered me during the day. He noticed I hadn’t been acting the way he was used to me acting; I hadn’t come up from the basement where I stayed for anything and there was no sign I was even in the house. Tim hadn’t seen or heard me and started to wonder.

He decided to yell down the stairs to check. Tim says I came up the stairs, but I was unsteady and out of it. He asked if I’d been drinking and I said I hadn’t, so he knew something was very wrong and called an ambulance.

I don’t remember any of it.

I was out of it for upwards of three days, Tim said. He had kept in touch with the hospital by phone and came to look in on me for himself, but I don’t remember it. He had looked through my Rolodex and managed to find my sister’s phone number here in Tacoma, Washington. He called to let her know what had happened. My honorary daughter had joined with my sister and done something else that was cool and helpful: between the two of them they had somehow gotten out the word to all my Facebook friends. And those people got busy—I had a flood of phone calls from friends of mine everywhere, so many that hospital staff just left the phone in my room.

I got enough cards and letters to open my own store, and more gifts than I knew what to do with. I had just had a major stroke but all I could think about was how lucky I was to have so many people in my life who cared.

The doctors told me I was going to be low functioning and basically helpless and dependent, but I think they were giving me a standard prognosis for people who experience a stroke of the type and severity of the one I had. I exceeded those expectations, but then I’ve never been a conformist. Now, my regular doctors tell me my stubbornness was key to my recovery.

After my discharge and forced relocation to Tacoma, I spoke with Tim. I remember thanking him for saving my life. He refused to believe he had saved my life and tried to downplay it.

But even if he didn’t save my life, he prevented me from laying there and continuing to bleed into my brain. If the bleeding had not been stopped, the pressure would have continued to build in my brain and if that hadn’t resulted in my demise, I would have been left with more severe damage than I ended up having.

So, Tim, let me say before the world, that if you hadn’t been such a caring friend, I likely would either not be here to write this or not be able to write at all.

If I ever have any children, I will name the firstborn Timothy, even if it’s a girl.

Now for the icing….

In the past year, I encountered a dear lady who is a member of a state agency called the TBI Council. It reports to the governor and recommends solutions to TBI-related issues. Her function on the council is legislative outreach. She asked me whether I would like to join her in lobbying state legislators on state funding for TBI issues and I accepted.

We are a great team and can practically finish each other’s sentences. The legislature is currently on break, but when it reconvenes, we will be there again lobbying.

Another cool thing was being invited to join another statewide committee affiliated with Washington State’s social and health agency. We try to help recipients of public benefits to resolve issues with their services and make recommendations for improvements in the state system. It’s statewide and I was surprised to learn I’m the only representative from Tacoma.

My lifelong friend Ray Watson tells me that while I was still hospitalized, I was already talking about using my experience to help survivors cope and advocate for TBI survivors. I really had no idea how I could go about that but here I am, doing just that.

My future’s so bright it hurts my eyes sometimes.

Isaac Peterson performing. (courtesy photo).

Isaac Peterson grew up on an Air Force base near Cheyenne, Wyoming. After graduating from the University of Wyoming, he embarked on a career as an award-winning investigative journalist and as a semi-professional musician in the Twin Cities, the place he called home on and off for 35 years. He also doesn’t mind it at all if someone offers to pick up his restaurant tab. Peterson also welcomes reader comments. Email him at isaac3rd@gmail.com.

(Editor’s note: BEST is delighted to welcome guest blogger, Marc Macialek of recoveringfromtbi.com, to the BEST website blog! Marc gives us some excellent insight, advice and information about neuroplasticity and brain injury awareness in his first article. Thank you, Marc! KT)

After my traumatic brain injury (TBI) in the spring of 2012, I learned how traumatic brain injuries and concussions affect the brain’s circuitry. After a concussion or traumatic brain injury, it can take a while for the brain to figure everything out again.

Our neural pathways vary in size and complexity like roads. Some are as complex and well-traveled as the large Los Angeles freeways where I live. Other less used pathways are like small dirt roads.

Brain injuries don’t discriminate. They can damage all those neural pathways making it difficult for our brain waves to navigate to the right sections of our brains.

A Tornado

In my senior year of high school, a freak, powerful tornado tore through my small, rural Pennsylvania community. The main road that cut through the hills and connected the small towns was impassable for several weeks due to fallen trees and power lines. Everyone in our town, and the towns around us, had to be patient and flexible. Commuters and 18-wheelers diverted from their normal routes and clogged smaller roads meant only for local traffic.

After some time, things were sorted out, and traffic could proceed as usual.

Something similar happens to our brains when the roads (neural pathways) are damaged.

This phenomenon is called neuroplasticity. It’s the equivalent of traffic being diverted around a natural disaster, while the damage is repaired. In effect, this means that our brains can rewire themselves to some types of damage. That’s very good news for us in the long term. In the short term, though, it can be very frustrating, because it can take a while.

I found three things during my early recovery that helped facilitate neuroplasticity: curiosity, creativity, and tenacity.

Curiosity: Try to divert the frustration of the injury into a genuine curiosity of what does and what does not work. Each list is vitally important. Some questions to ask yourself are:

How much rest do I really need? If the answer is 18-20 hours, that’s fine. Giving your brain the resources it needs will pay dividends later.

What areas of my brain still work? List areas here that you and others observe to be working at or near pre-injury levels (this is important for the next step).

Creativity: When our brain is damaged after a TBI, the solutions we would normally use for problems often aren’t available to us. That’s true of cognitive and physical setbacks.

Review the list of what does work and what doesn’t. How can you use the areas that do work to resolve the areas that don’t? This can require us to be incredibly creative and look for solutions we might not have used before our injuries.

Here’s an example: one of the strongest effects of my injury was anger and a short temper. It took some experimenting with different things to find ways to control it. I eventually found that exercise, meditation, and a low dose of a mood stabilizer prescribed by my neurologist helped me get a handle on it. I’m now six years post injury, and still use this regiment to stay on an even keel.

Tenacity: If you have experienced a TBI, you have this quality by default. I don’t care how beat up and worn down you feel. You are TENACIOUS! Please recognize that about yourself, and give yourself some grace on the bad days. On the good days, be grateful and continue to walk the path of recovery. You can do it! Seek the help and support you need.

The Glue to Hold It Together

I’m aware that the 3 tips I offered are high-level cognitive functions. In order to make them work, your brain needs the proper resources. One of the biggest ones is rest. And lots of it!

After my injury, I went back to work almost immediately, since no one told me otherwise. I was only able to work 4-5 hours a day and would become exhausted. Sleeping for 12-14 hours per day was commonplace. It was incredibly frustrating, because I couldn’t think of why I would be so tired.

Remember that it takes lots of energy for our brains to rewire themselves. A human brain can generate 12-25 watts of electrical energy, which is enough to power a small light bulb. An injured brain is usually on the higher side of that range because of all the extra work is must do for day-to-day functions, and heal itself AND find its way around the damaged neural pathways.

As a result, our bodies divert more energy resources to the brain. Unless we are aware of what’s going on behind the scenes, it can be tempting to get frustrated. We might even feel lazy, because all we want to do is sleep.

I know. I’ve been there.

Getting lots of rest is a very important (maybe the most important) part of facilitating neuroplasticity. If you need 12-14 hours of sleep (or more), so be it.

Give your body and brain what they ask for, so they can do the work of repairing themselves.

Marc Macialek (courtesy photo)

Marc Macialek survived a traumatic brain injury in spring 2012. After struggling to find good resources to help with his recovery, he was able to connect with a doctor who gave him tools to make the most of his recovery. Now he works to help survivors and caregivers find the resources to make the most to survive and thrive through the recovery journey. You can find more of his writings at his site recoveringfromtbi.com.

You only have your thoughts and dreams ahead of you. You are someone. You mean something. Batman 🦇

Yes, really. Batman was onto something!

It took real-life superhero, Robin Spicuzza, some time after her traumatic brain injury (TBI) to regain her superpowers of meaning and being; with help from fellow BEST Superheroes and super-powered tools, she rebuilt her life.

Help others like Robin rebuild after brain injury with the BEST tools.

(Editor’s note: What’s the definition of community? Writer and stroke survivor, Isaac Peterson, has an excellent, must-read definition of our community in his latest article. KT)

Since I got a traumatic brain injury (TBI) of my very own, I’ve seen many references to the TBI community, but I’ve never really seen that community described or defined.

So, what is the TBI community? I know what community means but the idea of the word doesn’t really sum up the group of people of which I am now a part. The online dictionaries I’ve looked at have quite a few definitions, some of which apply to the TBI community, and others not so much.

It can get quite involved, so I guess I’ll just lay out here my ideas about what the TBI community is about. But one thing is for sure: the TBI community has too many qualities to be summarized by a dictionary definition.

The TBI community isn’t a place or a geographic location. We are everywhere. We live in every country in the world, in every region where there are people. We are from all walks of life, from every religion, faith, race, ethnicity, economic status. We are men and women, boys and girls. We are husbands, wives, mothers, fathers, sons, daughters, brothers, sisters, aunts, uncles, and friends; you name it.

We have no centralized authority, like in a government or a corporation. We are pretty much leaderless; we have spokespeople and advocates, one of which I am proud and privileged to be. There is no head of the TBI community or organization issuing marching orders and there is no hierarchy. Everyone with a TBI is an equal part of the community. Each of us can be leaders in our own way, depending on our own individual desires and capabilities, and we are all leaders and spokespeople at different times. We have many groups and subgroups, which are unfunded or underfunded.

But we exist and persist, because the alternative is unacceptable. We can reach out and provide comfort and strength, and in return be comforted and strengthened. We are largely in loose, informal networks, that, with the aid of the internet, allows our community to be international in scope.

The community includes people without traumatic brain injuries, too: caregivers, family members, friends. Anyone who helps a TBI survivor cope is part of the community.

There are meetings, large and small, formal and informal. There are local support groups and large gatherings, like the recent two-day Washington State conference which I attended. And there are a surprising number of agencies and organizations reaching out and touching the lives of people living with traumatic brain injury.

There are no membership rolls or dues. No one chooses to be part of the TBI community; we were brought together by an accident of faith

We are not seeking power. But we are seeking understanding, acceptance, autonomy and independence on our own individual terms. We help each other gain and maintain our dignity in a world that largely does not and cannot understand. There are no dogmas or manifestos; our only agenda is to live full, normal lives and fully realize our true potential.

We are joined together in a common cause and bound together by faith, united by hope for the future.

My personal experience in the community is that it’s very warm and welcoming. It’s been a group that encourages members to share their thoughts, hopes, fears, their challenges and triumphs, all without fear of being laughed at or marginalized. The sense of kinship and unconditional acceptance has been strong, and the feeling of strength and empowerment has been a lifesaver for me.

Here is a place where I feel confident baring my soul to like-minded people, all with a common purpose and shared hopes and dreams.

It has been a source of inspiration and support. The TBI community has helped me feel much less alone in the world and confident of my place in it.

I know I am not the only one who feels that way.

We are many and we are everywhere.

Isaac Peterson performing. (courtesy photo).

Isaac Peterson grew up on an Air Force base near Cheyenne, Wyoming. After graduating from the University of Wyoming, he embarked on a career as an award-winning investigative journalist and as a semi-professional musician in the Twin Cities, the place he called home on and off for 35 years. He also doesn’t mind it at all if someone offers to pick up his restaurant tab. Peterson also welcomes reader comments. Email him at isaac3rd@gmail.com.

The Brain Energy Support Team (BEST) is thrilled to share our latest BEST Superhero of the Month for October 2018!

Nick Mehrmoosh (courtesy photo)

Congratulations and best wishes to Nick Mehrmoosh! Nick is deeply involved in the brain injury community in creating education, awareness, resources tools and much more. Nick also serves as a BEST board director.

This dynamic and passionate leader has truly made an impact in Washington State.

Here’s what Nick’s nominator had to say about him.

Nick is a graduate student at Eastern Washington University. His studies are in psychology and his focus is brain injury. Nick is a support group facilitator and on the Board of Directors for TBISN. He worked with TBISN, educators, and professionals to create the 2017 TBI Panel Symposium intended to educated students, professionals, and relevant populations about vital topics concerning brain injury and disability, for the betterment of professional and public awareness and he’s repeated that performance for 2018. He uses his experience and education to help those with brain injury in the Spokane area.

Thank you, Nick, for all that you do for our community (and beyond)!

Know a special real-life superhero in the brain injury community? We’d love to hear about them. Click here to learn more and nominate someone today!

(Editor’s Note: Writer and survivor Isaac Peterson has shared his thoughts on the importance of brain injury support groups in his past writing. Today, he shares the different kinds of support groups available for survivors and their families and relays his personal experiences with each. KT)

All those stigmas and misunderstandings from people who haven’t had a traumatic brain injury (TBI) can sure add up to a lonely, miserable existence for TBI survivors.

It sure would be nice if there was a place where TBI survivors could go where the people had traumatic brain injuries or could at least understand the concept. A place where they could feel welcomed and accepted. A place where they could speak openly and not be judged.

There are such places and I’ve talked about them before. They’re called support groups.

Support groups exist for just about everything, including traumatic brain injury survivors, their families and caregivers.

There are even support groups especially for family members and caregivers. Everyone associated with traumatic brain injury in some way can find support–they need it, because admittedly, sometimes we can be a real handful.

A support group provides a way to keep up with the latest information on TBI; find strength in numbers; associate and socialize with people who share the same experiences; find acceptance without fear of being laughed at or criticized. But I’ve written about all that before.

What I didn’t write about was the kinds of support groups; it turns out there is more than one kind, catering to different needs, and it would be a good idea find one that matches your individual needs.

I think the type of support group most people think of are called peer-to-peer groups. These are the groups with kind of an unstructured format, where the members can freely discuss whatever is on their minds with other people with TBIs. Those groups have a facilitator just to keep things kind of orderly and on track. They can get rather free-wheeling and raucous at times, but like the one I regularly attend, there are ground rules designed to keep things from getting out of hand. Some of our ground rules are one person speaks at a time, what happens in the room stays in the room, no hugging without asking first and a couple of other common-sense rules. Though our group has a facilitator, he is not dictatorial, which leaves the group wide open to talk about just about anything, again, if it’s in an orderly fashion.

Our group has the bonus of having a facilitator who is also a long-time TBI survivor. The benefit of that is he knows from personal experience what we are all going through and has that kind of sensitivity about the kinds of circumstance we may find ourselves in. He joins in the discussions and provides the kind of sensitivity only a TBI survivor can be capable of.

Also, let me give you an example of a way my group has benefited me personally: if not for that support group and its facilitator you wouldn’t be reading this article. When I joined the group, I had only been out of the hospital after my stroke for short time; I was a real mess. But my facilitator saw something in me I didn’t see: after a few meetings, he approached me and strongly urged me to write for this blog. I resisted at first, because as I said, I felt like a real mess. But he continued to believe in me and persisted; he really believed I could do it. I finally gave it a try and writing for this blog has opened a new world of opportunity for me, opportunity that I would never have imagined was possible. My life and my future would be entirely different without that support group and a facilitator that believed in me when I didn’t believe in myself.

I hope you can find a support group that can help you as much as mine has helped me.

Another type of support group is run by professionals who have an expertise in some area, like speech therapy or physical therapy. From my experience with that type of group, they tend to be a bit more structured, with the facilitator determining the structure for each meeting. The topics in the groups I attended were predetermined by the facilitator, who make sure the train was on schedule, so to speak. The topic was put out there for the group and we went around the room. The comedy styling of one Isaac Peterson didn’t fit those groups as well as they do in the group I decided to join on an ongoing basis. There is absolutely nothing wrong with this type of group and if that is the type of group you are looking for, I urge you to find one and see if it fits your needs.

The groups I’ve attended also feature outside group activities like bowling outings and afternoons at professional sporting events. One group had a Hawaiian luau night with games and prizes.

If you already belong to a support group I urge you to investigate the kinds of groups available in your area–the one you really need and that would work best for you is out there somewhere. There are probably other types of groups I don’t know about.

The third type of group I do know about is in kind of a new category: online support groups. I know of one such group and it is a very good one.

This group is called Brain Injury & Mental Health Support and it’s a TBI group on Facebook. It’s the Facebook page of a TBI survivor in the UK named Michelle Munt and she does some very good work. She’s kind of a UK version of me, with her own blog. but she tends to be less of a smart aleck than I am, and she’s got a big presence on social media. This group has many members from around the world (I’m not sure about Antarctica), so you get a full range of experience and people. Members share their experiences from their triumphs to their disappointments. It’s a warm and friendly, upbeat and supportive environment full of great folks. You will receive a warm welcome and you can post about pretty much anything TBI-related. I heartily recommend this group; I belong to it myself.

Isaac Peterson performing. (courtesy photo).

Isaac Peterson grew up on an Air Force base near Cheyenne, Wyoming. After graduating from the University of Wyoming, he embarked on a career as an award-winning investigative journalist and as a semi-professional musician in the Twin Cities, the place he called home on and off for 35 years. He also doesn’t mind it at all if someone offers to pick up his restaurant tab. Peterson also welcomes reader comments. Email him at isaac3rd@gmail.com.